This year being a leap year, February's will have an extra day, bringing the count up from 28 days to 29 days. So with a whole extra day in the year, how will you be spending February 29th, 2012?
To me, it will be another day to wake up, take my daily cocktail of medication, and hope that I won't feel too tired or have a bad day full of cataplexy. I'll yawn my way through a long day of school full of boring classes and try not to nap until I can leave for the day. Hopefully my teachers will be understanding but that's not likely--how can I expect them to possibly know how difficult it is for me to resist sleep?
But it won't be just another narcaplexic day for me; it will also be the day that I will join others around the globe to raise awareness for everyone living with a rare disease, diagnosed and undiagnosed. In the United States, a rare disease is one that affects fewer than 200,000 people, and there are an estimated 30 million Americans affected by rare diseases. Struggling to find a diagnosis, information, and treatment are just a few of the things people with rare disease have to deal with, besides their medical problem itself. And unknown diseases can lead to a lot of misunderstanding when the rest of the world doesn't understand what you're suffering from either.
Rare Disease Day, a day devoted to raising awareness of these rare diseases, is taking place on February 29th, 2012, and people all over the world are going to make sure that these uncommon hidden diseases are well-spoken for. What will you do to help make some noise?
Hey, been following ur blog.. really cool.. I hope that u see my email I sent to u thru this blog soon.. been waiting on a reply for ages.. I wish I could attend one of the events for this day. it seems cool
ReplyDeleteThank you for supporting Rare Disease Day! My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. Rare Disease Day means so much to the millions of people and families affected by the approximately 7,000 rare diseases. Thanks again! Mary http://www.lalsolace.org
ReplyDelete@Anonymous Thanks for following my blog! Sorry if I haven't replied to your e-mail. I'm really horrible about checking it consistently, especially with being super busy lately and not having internet at my house. I'll definitely go through the 1000+ unread messages in my inbox and reply to your e-mail ASAP :)
ReplyDelete@Mary I'm so sorry to hear about your son :( I read the other night online that 30% of children with rare disorders won't even live to see their fifth birthdays, and it completely broke my heart! I can't even imagine being a parent and learning that your child has something as devastating as LAL deficiency. But by the looks of it, you've collaborated and created a great resource for other affected families, which is a big first step towards more awareness of ALL rare diseases. So thank YOU! :)